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Thursday, February 27, 2014

A slice of the non-sleeping life

In the ever-cycling parade of moods that is Janey, we have come back to one of the toughest---Non-Sleeping-Girl.  It's only been two nights so far, and I'm hoping it is a short-lived mood, but it's rough.  And I have to give credit where credit is due---it's much tougher on Tony than me, because he is far better at staying awake and taking care of Janey in the night than I am.  Let's have a little slice of life from last night...

7pm---Janey goes to sleep, after having been up (and cheerful) since midnight.  Tony was up with her from midnight on Tuesday night into Wednesday.

3:30am---Janey wakes up, ready to party.  Superhero Daddy attempts to care for her, but is just too tired, and wakes up Slacker Mama.

4 am---Slacker Mama gets up with Janey.  Janey tempts her with saying "want to snuggle?"  Mama pictures a nice back to sleep time.

4:01 am---Janey is back up.  She wants ketchup.  She wants Kipper.  She wants cheese.  She wants Daddy.

4:02 am---Mama doesn't respond quickly enough.  Janey takes matters into her own hands and opens the door to the bedroom where Daddy has been trying to sneak in some sleep, and wakes him back up.

4:03 am---Mama tells Janey to leave Daddy alone, and goes to get Janey some ketchup.  Mama takes a millisecond too long.  Janey screams as loudly as she can.  Mama tells Janey it's time for the screaming room.  Janey looks excited and rushes into the screaming room (aka---the bathroom).  Mama reflects that the once promising screaming room approach to Janey's screaming no longer works at all.

4:15 am---Janey says "All done screaming!" after some good times in the screaming room.  We leave.  Janey screams loudly.  We got back.

4:30 am---out of the screaming room.  Janey goes to wake up Daddy again.  Daddy's saint-like patience is at an end, and he asks Mama to PLEASE keep Janey from waking him up again.  Mama says she will try her hardest.

5 am---after trying her hardest for a solid half hour, Mama suggests to Janey that they "snuggle down", which has been known in rare occasions to lead to sleep.  Janey happily snuggles down, and Mama instantly goes to sleep.

5:02 am---Janey goes to wake up Daddy.  Daddy gives up and gets up.  Mama hears him and says she is sorry every way she can think of.  World's Best Daddy and Husband tells Mama to just sleep.  His voice has only the slightest hint of anything but calm.

5::03 am on---usually morning routine of Mama drifting in and out of sleep while Daddy makes Janey bacon and makes himself and Mama coffee, the blessed substance without which we would all be done for.  And another day begins in earnest.

Tuesday, February 25, 2014

Thoughts after a long and strange vacation week

Winter vacation week is over, and for Janey, it went quite well.  This is the vacation that is often the stuff of nightmares, being situated in the middle of winter with little to do outside the house, but this time, Tony took the whole week off, William was home from college, and Janey got a huge amount of attention from them and from Freddy, and overall, she was happy.  We noticed by the end of the week, she was talking more than usual, something I've noticed happens after she is around us 24/7 for a while.  She showed also a new behavior---getting very mad over specific things.  She certainly has gotten mad and upset PLENTY before, but this mad was different.  For example, at one point Freddy and I were watching a Star Trek The Next Generation episode, and Janey wanted to watch Kipper "on the big TV"  Tony offered it on the computer, but she didn't like that idea, and she threw a fit, screaming "I WANT KIPPER!  ON THE BIG TV!  ON THE BLACK TV!"  She stomped her feet and overturned a toy box.  We didn't give in, but were able to talk her down much more easily than times when we had no idea what she was upset about!  It looked like a 2 year old tantrum, and it was actually quite nice to see, in a way.

The big event of the vacation, for me, was a horrible medical test.  A little back story...About 18 months ago, my doctor ordered a bunch of blood tests.  This was because at several points, I've had quite abnormal liver tests (with normal tests between the abnormal ones).  I'm quite sure something happened to my liver both when pregnant with William (because of severe preeclampsia) and when I had a terrible reaction to Aldomet when pregnant with Janey.  But to assure I was okay, the doctor wanted more testing done.  This turned up some weird results, the biggest of which was a marker for scleroderma, a marker that is almost always accurate.  This led to seeing a rheumatologist, which in turn led to seeing about a million other specialists, which lead to about a million other tests.  As is usually the case with me, I got some bizarre results, but overall, nothing definitively wrong.  I was diagnosed with an "undifferentiated connective tissue disorder" and "possible Sjogren's syndrome" and "maybe future Scleroderma"  All of which means little.  However, in the course of all this, at some point it was noted I get short of breath a lot.  I had written this off as being out of shape, but the pulmonologist wanted me to see a specialist in pulmonary hypertension.  I did, and that doctor said I needed a right heart catherization with a combined exercise test.  I balked at this, but he said I was "the strongest possible candidate for the test he's ever seen".  An in office test showed I probably had PH---which is a very scary and usually fatal diagnosis.  So---I agreed to the test.

To end the suspense, the test was perfectly normal.  I am fine.  However, the test itself was HELL.  I was told it's usually no worse than a dentist's visit.  Well, if that is the case, the dentists must be like the one in "Little Shop of Horrors", the sadist dentist played by Steve Martin.  It turned out that I have arteries that don't like things poked into them.  In trying to get a port into my left wrist, the first doctor failed, the second doctor failed, the third big gun doctor they called in failed.  So after 75 minutes and FIFTEEN attempts, they switched to the right wrist.  At the same time, they were working on getting a probe into my heart through my neck.  This took about 7 attempts, a broken wire, a few "Oh s**t"s from the doctor, questions about whether I've had heart surgery (no, I haven't), etc.

I came home from the test feeling awful, and I kept feeling worse all week.  Eventually, by Saturday, although I had vowed to never visit a doctor again, it was pretty obvious even to me my wrists were infected.  I had a fever, and they had spreading redness.  So another doctor's visit, and only some quick talking on my part let me "try" having antibiotics instead of going back to the hospital.  They seem to be working, and hopefully, it's all over but the huge bills I'm sure I will get.

So that's a long story that in the end is fine.  The other thing I heard about on Saturday doesn't have any happy ending.  A dear friend's nephew was killed in a car crash last Friday, driving to work, seat belt on, slipped on snowy unsalted roads into the path of a truck.  He was 20 years old, married with a daughter, and a son on the way.  Gone in a random, horrible flash.  I didn't know the nephew at all, but that's not the point.  It was the ultimate and saddest example of random I can think of.  Nobody was doing anything wrong, but still---things happen.  Tragic things.

My mind has been working on all of this, and of course there is no neat conclusion.  But my thoughts have been along these lines---We try all our lives to control outcomes, to predict problems, to make sure we are healthy and safe.  And we can't.  The tests were all well meant for me, but they were not really any use, and in fact they caused me some harm.  The man killed was doing all the things a young husband and father should do, but he still was killed.

How does this relate to Janey?  Well, it made me think that the future is far from assured for any of us.  And for Janey, the present is what she really has.  She doesn't, as far as I can tell, anticipate the future.  She lives in the now.  And when I am making decisions about her future, I am going to use how it will affect her Nows.  I don't mean I will not do the basic things we all need to do for health and safety, but I am not going to make big changes in her life in hope of some vague future benefit.  She adores the school she is in now---I will leave her at that school.  She was very unhappy last year at summer school---I am not sending her this year.  We will work on giving her happiness.  We can't predict the future.  We can't prevent, in any big way, the events the future has in store for us.  I will try to not dread the future, Janey's future or mine.  I will work on every day we are given being the best day it can be.  I know I'll be tested in this, and I know I won't live up to that goal, but I am going to try.

Thursday, February 20, 2014

Vacation week and a new Janey mood!

This is winter school vacation week here in New England.  The last few vacations have been very tough with Janey, so Tony took all of this week off, which is great.  Janey can't seem to deal with both not being in school and not having Daddy home.  This week has been---not bad. Janey hasn't cried much, or screamed much.  However, she has been very, very quiet.  More than we've ever seen before, she has had long periods of just standing still and looking at us, or toward us.  A few times, we were trying to locate her (something we do every minute or so if we aren't looking directly at he) and she has been right in the room with us, just extremely quiet and motionless.  She has also just seemed on edge.  At times, she has been singing thought a huge selection of songs, each in a scared sounding voice, something that you would think would be hard to do with jolly songs like "Jingle Bells", but she pulls it off.

Janey's mood might be partly because of a medical test I had to have on Tuesday.  The results so far were very encouraging, but the test was an ordeal and I have large bandages on my wrists and neck.  This seems to be bothering Janey a huge amount.  Usually, she doesn't notice things like that, but over and over, she has come up to me, stared at me, and then gently tried to take off one of the bandages.  We have to tell her no quickly, and she backs away wordlessly, looking spooked.  I have tried hard to talk to her about this, and tell her I am fine, and even let her watch me change the bandages so she doesn't imagine something awful is under them, but it doesn't seem to have helped.  We were all nervous before the test, and I was in a lot of pain after it, and she of course picks up on this, but doesn't understand it.  It must to her seem very scary---Mama looks different!  Mama cringes a little without meaning to when I get close (hoping she won't jump on me).  Everyone seems edgy!  It is so hard to see Janey having feelings like this, and not being able to know if she understands my explanations at all.

I'm thinking about how important familiarity is to Janey, and that ties into not wanting her to change schools.  Her world must be a frightening place, so often.  She has no idea why things change, when they do, or why people she expects to be there, to be constant and consistent, sometimes are not.  Even little changes, like me having bandages or not being able to do all I usually do, scare her a good deal.  And her reactions are not always what you would expect.  I think Janey often goes into a freeze mode.  When she just stands there, not doing anything, I think it's when she is so worried and nervous she can't even react.  It's like a startled animal in the wild.  She might look like she hasn't noticed the changes, but she has---she just has no idea how to react.  And when she does decide how to react, it might not be obvious to us that her scared tone or crying or frantic actions have to do with the changes, the confusion.  If the world is hard to understand, consistency seems like one the greatest gifts we can give Janey.

I will be very glad when school starts again, but this one time, not so much for me, selfishly, but for Janey.  She needs that structure, that predictable mix of home and school.  There is no vacation for her from autism.

Friday, February 14, 2014

Chocolate Crazed

We don't give Janey chocolate very often, because it leads to her not sleeping all night and being frantically wound up.  I wouldn't believe if I haven't seen myself what the smallest dose of chocolate can do to her, if she eats it past noon or so.  However, today, as you probably know, is Valentine's Day, and Tony was very sweet.  He got Janey a card and two small packs of Ghiradelli chocolates.  We gave her the card  and chocolates as soon as she woke up, and she was very, very happy.  I have to admit, the card got just a glance, but the  She ate them down in no time flat.

What was very striking, however, was how Janey acted after finishing the chocolates.  I haven't been around a lot of junkies, but I've watched enough TV to see how at least there they have them act, and Janey was acting a lot like that.  She kept looking over and over and over in the empty chocolate packets, hoping she'd missed something.  Then she started tearing open anything in the house that looked like a gift---a computer game in a box, a gift bag hanging around from Christmas, a box with hair ties inside---anything at all that looked like it could possibly hold a chocolate treat.  She did it with purpose and singlemindedness.  Then she started pulling out all her talking tricks.  She said "We ran out of chocolate!  I want chocolate!  I will give my Janey some chocolate!  Let's look for chocolate!  We will call Daddy!  Where is the chocolate?"  It was really something.

I'm not sure what is going on here, besides her very, very strong love of chocolate (which is strange, because I can take or leave the stuff).  But it certainly had the look of addiction or at least potential addiction to me.  It was very striking how intense she got about it.  She rarely is that direct, that forceful, in her want for anything. this good or bad?  Do I somehow take this and run, using it as a way to get her to talk?  Or do I completely cut chocolate out from her diet, because it seems to affect her so extremely?  Is is something she needs, based on her reaction, or is it something she very much doesn't need?  I just don't know.  It's something I'm going to watch carefully, that's for sure.

Happy Valentine's Day to all of you!

Wednesday, February 12, 2014

Observations on a School Visit

I went today to observe a program within our school district, what is called an "autism strand".  It's a section within a larger school that is a collection of classrooms for children with autism only.  Janey currently attends an inclusion school---she is in a classroom with kids with no disabilities, kids with mild disabilities and a few other kids with more severe disabilities like her.  I'm very happy with Janey's school, but to be able to be sure it's where I think she will be best served, I felt it was fair to see what another program was like.

My conclusion?  I still feel Janey is best where she is.  That's not to say I didn't see a lot good in the autism program.  I did.  The two main teachers I saw at work seemed great.  They were enthusiastic, engaged, praised the kids a lot and seemed to be getting the kids to work well.  The rooms I saw had about 8 kids apiece.  There were lots and lots of other people in the rooms besides the main teacher---paraprofessionals, speech and OT therapists, ABA therapists and others.  The kids were busy and for the most part seemed happy.  There were a few behavior incidents while I was there, but they were handled well.  Overall, most the kids seemed to be working at a higher level than Janey does (some were doing work with compound words, others with plurals, for example) but a few kids were working one-on-one with adults and they might have been working more at Janey's level.  The school goes up to 8th grade, and currently does have an afterschool component built in, although the funding for that might be gone next year.

Why don't I want Janey moved?  Well, there are several reasons.  One is that I believe in inclusion, wholeheartedly.  I don't think the best way to educate Janey is in a classroom with only other autistic kids.  I know not everyone agrees with me there, and I respect that.  But I have seen inclusion at work for many years now, from both the perspective of a special needs parent and a regular ed parent, and it works.  It works for both special needs children and regular ed children.  It's no coincidence that Janey's current school scores the highest in the city on many measures (out of MANY elementary schools)---inclusion helps everyone learn.  And Janey learns from her peers.  She is a mimic.  She picks up on every sound around her.  One child that was upset at the autism school made a low screaming noise for a long time.  The kids didn't seem bothered, and I wasn't bothered either, but Janey, whether bothered or not, would pick that up.  She would imitate it. And I'm not saying it's wrong to make that sound, but the goal with Janey is to maximize communication, and I think that is best done by being around children that communicate effectively.

Another reason?  If a school placement is working, why change it?  Janey has had a few tough periods this year, but that's been true of every year and, most likely, will be true of every year.  Overall, however, and this is backed by hard data, she has made progress.  More importantly, for the most part, she has been happy.  Lately, especially, she is truly loving school.  She loves the before school exercise program (which I don't think would work with only autistic kids---it works to include her, because she has many, many models to follow that are following directions), she loves the after-school crafts programs, she loves her student teachers, and she loves (and I love) her special ed and regular ed teachers.  She has wonderful classmates.  Her school has just been approved for a K-12 pathway.  It seems to me like a crazy time to move her away from it.

The last reason is just my gut.  I didn't feel as good about the autism school as Janey's current school.  I'm sure part of that is that I know so many people at Janey's school.  I know she is safe there, and loved.  That is worth a huge amount to me.  But additionally, I like the school physically.  It's clean, it's orderly, it's well-run, it has a great principal---it's just a nice place to be.  The autism school looked shabby, in many ways.  That's a picky sounding thing to say, but it's also something that I think any parent of a regular ed. child would look at.  You want your child in a school that looks cared for, that feels calm and loving.  You want a feeling about your school you can't quite put into words, but you can feel.  I want Janey to stay at a place I feel in my heart is the right place.

Some day, things might change.  But for now, I saw nothing at the autism school that couldn't be provided to Janey just as well where she is, without having to move her.  I am very glad the autism school is there.  It seems like a place that serves the children that go there very well, and I know if I didn't have other choices and Janey did go there, she would be cared for well.  But I do have another choice, and I am very lucky to have it.

Tuesday, February 11, 2014

The Big Bag of Toys

Janey is continuing her current wonderful stretch of happiness, with a little more talking added in to the mix.  It's been fantastic.  I need to remember days like this when there are days way at the other end of the pendulum, that there are days when Janey is just amazingly sweet, happy, funny, cooperative, engaged...I need to savor every second of these days.

When looking for something in our cellar, I came across a huge bag of toys I had stored at some point.  I think I put them away when Janey was about 5, possibly during the awful, awful period of time she had then, when she cried for about 2 weeks on end.  My memory of that time is a little hazy, but I think I was trying to clear out the house to try to somehow make it better for Janey, and I decided to put away a lot of toys she had no interest in.  It was like a time capsule, almost---toys that Janey had liked at 2, but that by age 5 she ignored.  There were lots of Care Bears, assorted stuffed dogs, a Bitty Baby and a Cabbage Patch Doll.  It was hard looking at them all.  I remembered the boys gave her the Cabbage Patch Doll for her 2nd Christmas (with my help).  I bought the Bitty Baby actually for myself, actually, when I had realized I wasn't ever going to have a girl.  A month or so later, I was pregnant with Janey.  Janey loved dogs for her first few years more than anything, until she suddenly stopped noticing them, and then became extremely afraid of them.  And Care Bears?  There was a time when Janey knew their names, asked for them at stores, was a huge fan.

I decided to bring a few of the toys up, mainly the Bitty Baby and the Cabbage Patch Doll.  I had them waiting for Janey when she got home.  There wasn't any miracle---she didn't suddenly want to play dolls---but she looked at Bitty for a long time, especially her eyes.  And when I handed her Cabbage Patch, I wanted to think I saw a tiny bit of recognition in her face.  I asked her "What is the doll's name?" and she actually said "It's name is Til...." and then looked away.  I jumped on it---"Her name is Tilly?  Hi, Tilly!  Are you Janey's doll?  Let's play with Tilly!"  Janey humored me with a smile, and I had Tilly kiss her, I brushed Tilly's hair, we looked at her fingers and toes and belly button---I had fun.  Janey I don't think really cared, but she didn't actively try to stop me.

I think the dolls are going to stay around for a while.  I think I'm ready for it.  They don't make me as sad as they did for a while.  I know the long, long ago Janey that had an interest in them might not be coming back.  But the Janey I have now---well, if she doesn't want to play with dolls, it is okay.  She has her own things.  She loves to run and jump, she has varied and cool taste in music, she can run YouTube like a pro, and just this morning, when one of her classmates greeted her, she let go of my hand and went to hold her friend's hand, and smiled a huge smile.  Janey is becoming her own person.  Like any child, she is not always exactly the child I pictured.  I am not blinded to the reality that she is in many ways severely disabled, that she is not like other children in some very big ways, that her life will be affected hugely by her limitations.  But with all that being said, she is perfect at being Janey, and I love the Janey she is.

Sunday, February 9, 2014

When She Was Good...

I don't want to jinx things (I'm a Red Sox fan, which makes me have an unnatural fear of jinxes), but Janey has been in an unusual and special mood the last 4 or 5 days.  She's been in the mood Tony and I call her "precious" mood.  It's one of the rarer of her many moods---very happy without a touch of manic, sweet and lovable.  It's a quiet mood.  She doesn't talk a lot when she's in this mood; she doesn't make any huge strides.  She doesn't much answer our questions, or comment on anything.  She is just quietly content.

It's striking me writing this that it's an example of how it's not the autism or the intellectual disabilities that make things tough with Janey when they are tough.  In the mood she's in now, she would probably appear to an outsider more obviously autistic and "slow" than in other moods she has.  For example, a cashier at a store yesterday tried very hard to engage her---asking her questions, offering to let her hold a book we were buying, waving to her---and he got no response.  When I asked her to give him a high five---the social response that seems easiest for her to consistently do---that even took her about 2 minute to complete, as she slowly, slowly raised her hand.  But she wasn't screaming.  She wasn't biting herself.  She wasn't crying.  She wasn't frantically singing.  She wasn't quoting lines from videos.  We had been shopping for a while, and she was just being---sweet.

Of course, in my quest to always trouble trouble when trouble isn't troubling me, I worry that if these content, quiet moods became the norm, it would be easy to stop trying hard to help Janey.  I wonder what it would be like to have a child always like Janey is now.  It would be hugely easier day to day, I can admit.  But I don't know how much she would learn, or how much we would keep trying to reach her.  Our lives would be very different.

And I'm telling myself---stop overthinking this.  Just enjoy it while it lasts.  And it is enjoyable.  Yesterday, Janey gave Tony a big hug, on her own, because he had shared a big plate of assorted sauteed winter vegetables he'd made with her.  Now, what parent would not love that?  I've been reading to Janey a lot---long picture books she would usually close within seconds, and maybe toss them at me for good measure.  But in this mood, she's been sitting and at least looking like she's listening.  That's my version of the vegetable hug---my own personal parenting dream come true.

All of Janey's moods are part of her.  This mood will change soon, and who knows what we will get next?  I can't control the moods.  I don't control much about Janey.  I'm just along for the ride, and the best we can do is find something in every mood to embrace.  With this precious mood, Janey makes that pretty easy.

Tuesday, February 4, 2014

The Politically Incorrect Enjoyment of Autism Parenting

I've been thinking for a while about this blog entry, and having some trouble putting into words just what I want to say, what has been filling my mind for a while now.  Last week one day, when Janey was having a very sweet day, Tony and I got talking about how sometimes, it's a good feeling to know she'll always be with us.  We watch the boys moving on.  William is in college, and weeks can go by where we barely hear from him.  Freddy is a junior in high school, and busy so much of the time.  Soon he too will be in college, and then they both will be adults.  I hope we stay very close with them, always, but I realize there are no guarantees.  And that is how it should be---kids grow up.  But Janey will not be growing up in that same way.  She will become an adult, but she will always be our child.  I usually say something here like "barring miracles" but I've come to realize the miracles aren't on the way, in our case.  I've accepted that.  And sometimes, I can truly embrace the idea of a child that stays at home forever.

So what's the problem?  Well, there are two ideas that come up over and over again in my reading about autism, both of which I do very much like.  One is autism acceptance---being able to see Janey as valid and important and lovable just the way she is.  I try to do that.  I am not perfect at it---there are days when Janey screams all day or says nothing for many days but "I want strawberry milk" or "I want Kipper" that autism is harder to accept than it is on the better days. But most of the time, I accept her autism, and on the good days, I embrace it.  The other idea is assuming competence.  I want to assume that Janey understands much more than she does, that she maybe even understands everything, that she has abilities that she hasn't shown us.  Basically, the philosophy is not to underestimate Janey, not to rule out anything in terms of what she can do.

So---I accept Janey as she is.  I accept that as she is right now, she will not be able to ever live on her own. She is my child forever, and that is sometimes a good thought.  However, I also want to assume that Janey has untapped potential, that some day, somehow, she might do what I'm told other people with autism have done---she might suddenly show that she can do things like read anything, communicate fully somehow---heck, maybe go to college.  And when I think that way, feeling happy that she is going to always be in my house, be my child forever, seems wrong somehow.  SO---how can I feel both at once?

There are many more examples I can think of like this.  I feel happy that Janey will never experience the nasty side of girls, the mean girls and the bullying.  But that is accepting that she is not going to ever understand social interactions at any kind of higher level.  I love it that Janey loves me wholeheartedly, that she smiles at me at times with the intense love that is uncomplicated by the complex feelings mothers and daughters have about each other as they get older.  But don't I want her to mature, to be able to see me as a real, flawed person she can break away from?  I love how Janey loves music---how she claps and jumps and thrills with excitement when a song she loves comes on, how she remembers any song she's ever heard.  But shouldn't I wish for her to have a mind that is more typical, a mind that doesn't have room for all that because it's learning algebra or history or biology?  I feel glad she will never have her heart broken due to an ended romance.  But I should be dreaming of her being able to experience that romance in the first place.

In short, when I accept the good parts that come with autism, I am also limiting what I expect from Janey.  I feel joy in the parts of her that are childlike and will remain so.  But should I feel only sorrow that she is not going to have a normal adult life?  Is it okay for autism acceptance to be also a joy in what autism has made Janey, even if her limits are part of what it's made her?   I don't know.  I might be just overthinking.  But for now, I'm going to choose to embrace the parts of autism mothering that I can, and to try to do so wholeheartedly, without worrying what that says about me.  I'm going to allow myself to picture what is good about having my child be a child forever.